Thursday, September 23, 2010

A part of me was terrified. Was I about to see something now, 14 years after my son’s birth, which I hadn’t seen then?I’d contacted the genetics clinic at the children’s hospital to ask for a copy of photos that were taken when he was four days old.

That day back in 1994 had been our own little 'D-day' – D for diagnosis. We’d brought Ben to the clinic to see if they could match his unusual facial features with a syndrome. An hour after Ben was born, the hospital pediatrician arrived, unswaddled him and looked at him disapprovingly: "He has anti-mongoloid eyes, low-set ears and a bit of a hare lip,” he said. These were soft signs for mental retardation, he added, though he didn't know what he was dealing with.

Four days later, the geneticist told us she thought he had a greater than 50 per cent chance of having a genetic condition associated with “abnormal facies.” In addition to having blood drawn for chromosome testing, she wanted the hospital photographer to take pictures she could show her colleagues to help them identify other newborns “like Ben.”

We trudged through the huge hospital, melting in our heavy winter coats, passing Ben back and forth in his car seat. They’d given us a paper with a room number on it, but we couldn’t find the room. We got lost in a labyrinth of white corridors with stark fluorescent lights that made my eyes water. Step – pain. Step – pain. My seat throbbed with the raw tears of childbirth and my chest ached with unexpressed milk. I felt dizzy.

I saw an old rotary phone in an empty office and left a quaking voice mail for my therapist: "Hi Jan, it's Louise Kinross calling. Ben was born and they think he has a greater than 50 per cent chance of having a chromosome problem. D'Arcy and I are really struggling and I was hoping you might be able to help us."

We eventually made it to the studio and the photographer was as nice as could be expected.

But I hated the hospital for taking Ben’s photos – face on, side views and shots of his feet, which were apparently extra wrinkly. It felt intrusive, stigmatizing and unnecessary.

And 14 years later it bothered me that the hospital still held these photos and I didn’t.

So I called the genetics counselor and asked for copies.

When I finally had the CD in my hands, I was afraid to pop it in the computer and pull the images up on the screen.

When he was still a newborn, my boy had grown beautiful before my very eyes. His differences dissolved in my sight because I saw his face and being as a whole.

When I was immersed in the everyday tasks of loving and caring for Ben, he was so much more than his unusual features: he was a cuddly ball of heart, giggles, interests and charms, whose chest rose and fell at precisely twice the rate of mine.

But in others' eyes the odd features superseded the boy. In their eyes he was different, an oddity, something "wrong."

Would I only see the clinical defects in the hospital’s photos?

I clicked on the first one (above) and my heart flooded with joy. What I saw was my beautiful, lovable boy, his four-day old eyes gazing right at the camera, his chubby arms, his round, full face. His right ear was cupped, yes – and I recognized the other anomalies – but it wasn’t scary. I saw the spirit and light in his eyes and it drilled a hole of tenderness in my heart, like it had so many times before.

I wonder if doctors have that joy of seeing a newborn beaten out of them because of their training to identify possible problems? And for a paediatrician to comment in such cold terms one hour after Ben was born is appalling.

He's beautiful! And this is a beautiful post. It is truly awful to have your newborn scrutinized for difference, for something wrong, just as you are starting to bond. I love looking at old pictures of Oscar, now that I really know and love him, because, as you say, his spirit and light shine through in ways I don't think I could appreciate then when I was in such a state of shock and fear.

Honestly, if I hadn't scrolled down and read that beautiful post, I would have thought, "what a wise little soul." His eyes are so penetrating -- my god. I remember when a doctor held my Sophie up in front of his posse of residents and students. He actually rotated her around in a circle like some kind of specimen. I can't forget that.

Our Bridget has a rare dual diagnosis (Down syndrome coupled with another "syndrome" with visible physical attributes) which the genetics folks were very intrigued by...and which they wanted to photograph and "present at their next symposium". My beautiful little girl sat and smiled as they photographed her legs only. I was torn between the educational value of the situation and the fact that it just felt so wrong. "Different" does not equal "odd" in the eyes of those who love someone with a particular diagnosis.

"What I saw was my beautiful, lovable boy, his four-day old eyes gazing right at the camera, his chubby arms, his round, full face. His right ear was cupped, yes – and I recognized the other anomalies – but it wasn’t scary. I saw the spirit and light in his eyes and it drilled a hole of tenderness in my heart, like it had so many times before.

Beauty, I believe, is something we choose to see."

The above quote is a perfect response to some of the comments following the articles in the NY Times recently about testing for Down syndrome. I wonder if the many people who believe that disability is scary, unwanted and inconvenient (and has no place in our world) have ever loved someone that much of the world rejects.

Once you have seen the light and promise in a person others consider imperfect, you begin to see that light everywhere. You begin to understand that words like BEAUTIFUL and BURDEN are very subjective. You become enlightened to the human condition an open to all it entails. You become compassionate. You become HUMANE.

Bridget's Lisa -- I found many of the Motherlode comments shocking. I love what you wrote in your last paragraph:

"Once you have seen the light and promise in a person others consider imperfect, you begin to see that light everywhere. You begin to understand that words like BEAUTIFUL and BURDEN are very subjective. You become enlightened to the human condition an open to all it entails. You become compassionate. You become HUMANE."

Imperfection is part of the human condition -- it is part of all of us. That's why we are able to feel empathy and compassion. Light and dark, strength and weakness, joy and pain. They touch every life, regardless of disability.

Of course Ben is beautiful! Aww, I hate that people make us worry about those kinds of things. I admit sometimes I have moments of "Oh that picture would be gorgeous if one of his eyes wasn't crossed so far in.." but that IS my son, those are his beautiful eyes, and there's nothing but beauty and love in them. When I think about it I don't care how the world sees him. He is always going to be gorgeous to me.

I can relate completely to this post. My middle son was born with "dysmorphic" features, but my husband and I take offence to the word. He is a beautiful boy and the thought that he is anything but a beautiful child is unacceptable to us. I am not in denial that he looks different than other children his age but he still has the same thoughts, feelings, wants and needs as all of the children around him.Genetics took pictures of him also to help "diagnose" him and I can relate to how you felt. Thank you for writing this.

The BLOOM blog welcomes comments from readers on issues that affect parents of children with disabilities. We moderate comments to ensure they’re on-topic and respectful. We don’t post comments that attack people or organizations.